Granny, they're being mean to me! I wanna go home!
It got this title because I told him to smile so I could take a picture for his granny so she could see how he looked. He made the saddest most pathetic face he could. The bottom picture is a growl or scowl at the pict line.
I told Joe to smile for granny and look at the sad face he made! Just pitiful so his granny would feel sorry for him. In the bottom picture he was showing us his displeasure with the IV line.
The next morning we met Dr. Benbadis and felt comfortable with him immediately. He told us that from the information about Joe's seizure history he felt certain they were all coming from the left side of his brain in front of his ear and he believed that Joe would benefit from surgery to remove the damaged cells that were causing his seizures. (We later found out that less than 3% of seizure patients are actually candidates for this surgery.)
The next step would be to check Joe into Tampa General Hospital and slowly remove his seizure medicines. Dr. Benbadis made a phone call and found there was a room available so Joe was scheduled to go in the hospital within the hour for the second part of his evaluation.
Our heads were whirling now - things were happening so fast. We checked Joe into the hospital immediately after our consultation with Dr. Benbadis and then Bill and I drove home to get our computers and clothes as well as few things for Joe for his hospital stay. That included a bag with plenty of cookies, candy and junk food to eat in the hospital.
Joe would have to stay in the hospital long enough to have a seizure strong enough to give them readings to see what part of the brain the seizures were coming from. They told us it could take a day or two or it could take a week or more but he had to have a seizure before he could be released so they could evaluate the location of the damaged or seizure-causing cells.
We were instructed that one of us had to be in Joe's room with him 24/7 for the duration of his hospital stay. Even though he would have cameras and monitors, as well as an EEG hooked up at all times, it could still take a few minutes for emergency staff to get to him when he had a seizure and one of us had to be with him to take care of him until help could arrive.
We decided that Bill would be the one to stay with him since I fall apart when Joe has a seizure – I don't handle it well at all. My stomach hurts, I cramp up and usually start to cry. I shake so bad that I have to sit down. Emotionally, I cannot handle Joe's seizures either. Bill is more level headed and is better about springing into action. Also, Bill is strong enough to hold and restrain Joe so he won't get hurt until staff could get to his room. Joe is much too strong for me to handle when he has a seizure. Bill was the logical choice.
Bill found a clean hotel for me near the hotel and got me checked in. Then we went to the hospital to be with Joe. When we got there they had given him his morning pills but had reduced one of his seizure medications to try to coax a seizure. They explained that they would cut back more of his medication that night and gradually reduce his medications until he had a seizure but they could not take him off his medications all at once.
EEG wires were attached to Joe's head which was covered with a gauze cap to keep the wires in place. He was told to press a “panic button” if he felt a seizure coming on and was able to press it. If not, when the EEG sensed seizure activity it would sound the alarms. It was better if he was able to press it because it would sound the alarm sooner but if he couldn't the EEG could sense it but either way, alarms would sound in his room and attendants would come immediately to help.
Two cameras were directed on him at all times. If got out of bed to sit in the chair he had to notify the nurses so the cameras could follow him. There were monitors for the two cameras in his room and also monitors at the nurses' station. His only privacy would be in the bathroom, and then someone had to stand outside the bathroom door.
A sign was posted outside Joe's room indicating the patient was at risk for falling or injuring himself I have to admit, when I saw that sign it was the first time the reality hit me that he was there to have a seizure. It was very hard on me to see the yellow bracelet that he wore which said, “Fall Risk”.
He was actually in the sleep clinic area of the hospital on the 5th floor and I noticed that several other rooms near Joe's room which had the same sign indicating that the patient was at risk for falling. Joe was not the only one here to have a seizure and through the days of visiting we heard alarms from the other rooms many times.
We thought they would put a bed in the room for Bill but they said he had to sleep in a chair or on the floor. If Joe started seizuring another bed would be in the way and there wouldn't be room for the medical help to attend to Joe.
That evening Bill got take-out food for me and took me to my hotel and then he returned to stay with Joe. He put a mat on the floor by Joe's bed to sleep on and stayed with him day and night until he was released. The nurses watched Joe while Bill slipped out every morning for a few minutes to pick me up at my hotel and then they watched Joe for a few minutes while Bill took me back to my hotel in the evening. For 8 days Bill and I spent all day in Joe's hospital room and for 8 nights Bill slept on the floor next to Joe's bed.
Joe and Bill were both given menus to select whatever they wanted to eat for all 3 meals every day which was nice. They both seemed to really like the food and had plenty to eat!
On day 7 Bill texted me in the morning and said that Joe had a grand mal seizure but he was okay now. It was bad enough that he had to be given oxygen to resuscitate him. He was weak and his tongue was really chewed up badly but it was over. He had to stay another day or so to get his medication back up to the right levels again and then we could take him home.
Then we got the good news. Joe was not longer a potential candidate for surgery to stop his seizures. He was now an actual candidate. As the doctor had predicted, all indications were that the seizures were coming from one spot on the left side. And all indications were that it was correctable with surgery!
It was now the end of September and no more tests could be scheduled until late November or early December. We made the decision to take the Canadian cruise we had booked and do other things that we had scheduled for the next 2 months while we waited for the next phase of the testing and evaluation. We were all so anxious to get this process moving as quickly as possible.